DR RADICA MAHASE
Judith Huemann, American disability rights activist once said, “If I have to feel thankful about an accessible bathroom, when am I ever gonna be equal in the community?” The general attitude towards persons with disabilities in Trinidad and Tobago – both visible and hidden, is one of bare tolerance and basic appeasement rather that any real attempt at inclusion. Sadly, the people in positions of authority, especially those in government, will not agree with this because they are unaware of the challenges experienced at the lower levels. Thus, hardly any efforts are made to change the existing system so that persons with disabilities are treated as first class citizens.
In the case of developmental disabilities, such as autism, the entire system, from diagnosis to adulthood, is one that continues to fail in our country. First there is the first major obstacle – getting a child diagnosed. The simple process of getting an appointment with a development paediatrician in a government health institution is one that can stretch anywhere between five to 18 months. Many parents complain of waiting months for an appointment only to be attended to by interns who cannot diagnose the child, some of whom insists that “nothing is wrong with the child” even when they come across two and three years old who are not saying words. Imagine, in our society parents consider themselves lucky when they get an appointment and feel like their "prayers have been answered” because they were able to access a service that should be accessible in the first place.
Next is the support given to parents once the child is diagnosed. Rather, the lack of support after the diagnosis. The standard procedure is to recommend various forms of therapies and immediately following the diagnosis, many parents frantically try to access these various forms of therapy. Parents panic because there is no guidance after the diagnosis, many use up their savings paying as much as $6000 for one assessment. There is a deep gap regarding advice and assistance as well as counselling services to help parents deal with the diagnosis and to guide them forward.
[caption id="attachment_987890" align="alignnone" width="1024"] We really have to get past the idea that providing for families, or children with disabilities or children with special needs, we’re doing somebody a favour, says Independent Senator Paul Richards.Photo Courtesy - Dean Matthew Cruz - Photo Courtesy - Dean Matthew Cruz[/caption]
For those parents who are from lower income groups, those who are struggling financially and who need government assistance, accessing social welfare is another major hurdle to cross. The existing structure, with the means test, makes it difficult for many parents to get the additional financial help they need for their children to access education and therapy. Then there is the actual stress of running around just trying to complete the application process, a process that is both tedious and lengthy. For example, the system states that the diagnosis must
